justsurviving

Stroke Survivor - female
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  1. justsurviving

    New superpower?

    By justsurviving,

    Bob has decided that it is time for us to get some regular exercise (apparently I have plumped up too much for his taste). We used to belong to a running group that met every Tues & Thurs and we averaged about 10 miles a week. Since I am unable to run fully just yet, we have signed up with a new group for beginners, incorporating walking into running/jogging. Last night was the first night.
     
    Bob couldn't make it because he was "working" (pshaw ) so I was going solo which always makes me a little nervous - would I find it? am I going to be the only 'problematic' one? will people stare? etc. - well, I found it and addressed the whole stroke thing upfront so that questions aren't (hopefully) necessary. After a few introductions, we were sent on our way around Lake Eola (.8-.9 of a mile).
     
    I walked for quite a ways and decided to try a jog. That is when I saw him. I knew him!! I had never seen him before but I knew him! I saw him ahead of me, walking my way and was just drawn to him. To make sure there were no assumptions, I went up to him and said "May I ask, did you have a stroke?" He nodded. I was right! He was one of my kind. "Me too" I related. I told him that it was my left side and I asked him when his stroke occurred. He hesitated and I realized that this was my first encounter with someone from Planet Aphasia. I was patient and let him speak. "3 years" he said. He indicated that he wanted to say something else and then said "Yours" Although I don't have a decoder ring, it wasn't necessary for our little conversation. "9 months ago" I told him. And then I felt guilty. He was using a cane and dragging his foot along while I was trying to learn to run. I know all strokes are different, I just couldn't help but feel guilty for being more mobile. He then said "3 times" and motioned a circle with his unaffected hand. I got it - 3 times around Lake Eola - I was very impressed as I wasn't sure I was going to make it once. I let him know that I was impressed. I touched his arm, let him know that he was doing great and hobbled along with blurry vision.
     
    I was tearing up because I got off relatively easy and I struggle so much that I can't imagine how he must feel. Tearing because I now have a superpower that I never would have had BS (before stroke) - a stroke-dar (stroke radar). Tearing up for all of us stroke survivors. I was glad that I was last, no one was around me to witness this and ask or talk to me about it. It took halfway around Lake Eola before I composed myself. I did make it around once and that was all I could do. My affected ankle was angry for this unexpected adventure and it needed a rest. It was a good time to go home and reflect on it all.
  2. justsurviving

    How long?

    By justsurviving,

    I know that I am a little punked out because of med mix-up (I forgot to take my Effexor & Aggrenox yesterday), but I have been wondering lately how long stroke related stuff will be on my mind. I want it gone. Now.
     
    Ugh, it is still here, dangit!
     
    I was talking to someone about my frustration that I am unable to do certain things. He sat thoughtfully for a moment, pulled out a notepad, and wrote "YOU HAD A STROKE" on it. I hated it. I don't want it anymore. I don't want to blame everything on it anymore. I'm tired of being tired and feeling guilty for wanting to rest, relax, or sleep. It almost pushes me to the point of anger - at the stroke, at the situation, at myself, etc.
     
    Yeah, this can be construed as a pity party & I truly apologize if that is what is being conveyed. I seem to be waiting for it to just go away already. I don't want to identify with it (the stroke) since I am at the far end of the continuum of looking more normal (but of course NOT normal) than being completely paralyzed & stroked out. Why can't I just be that extra step to normal than here? blast! :ranting: This in no way is simplifying or meant as an offense in any way, shape, or form to those who are on the opposite continuum - it is simply my burden right here and now.
     
    In the same idea - if missing one day of meds makes me feel this way & I don't want to be on these meds for stinkin ever, will I feel like this again once I get off them (in Oct)? UGH!
  3. justsurviving
    DH (Bob) is in Pennsylvania for the week so I am lazing around enjoying a *quiet* house (that boy sure can be loud!).
     
    Last night, while watching TV, my neck started to hurt. I couldn't tell if it was a muscle or the same pain I got from when I stroked (carotid artery dissected). It freaked me out. I can't just have a sore neck anymore, I always will have stroke symptoms on my mind - man I hope that goes away, I have a long life yet to lead to worry constantly about a second stroke (35 on last birthday).
     
    I called Bob and let him know that my neck was sore but I was so sure that it wasn't stroke-related, that I went to bed only in my undies. He knows that if I was truly concerned enough to call 911 that I would wear full clothing to bed :big_grin: . I told him that if I have any symptoms of TIA (transient ischemic attack) today, then I would call 911 immediately, call him, and we would not start a family.
     
    I'm wigging out just a bit still. It doesn't help that my heart surgery was just scheduled for August 25th. For the love of god, I always considered myself to be healthy. Dangit!
     
    I'll keep updating with new/different information.
  4. justsurviving
    Ahhh...Alaska was beautiful...& cold! We flew into Anchorage and spent some time downtown - it was very pretty with baskets of flowers hanging from lamp posts. Then we took a bus to Whittier, AK, very quaint small harbor town. We walked around quite a bit before getting on the ship. We enjoyed the "small town-ness" of it all.
     
    Two days at sea = boring! I read lots - thank you to Pam & Lisa for the book recommendations - I read Suzanne's Diary for Nicholas (5 stars), The Red Tent (5 stars), and Helter Skelter; regarding the Manson murders in the late 60's in California (4 stars). Poor husband felt ignored but it lent itself to a perfect vacation for me.
     
    Skagway - wow! We actually went on a hike. The description was "...2 miles of uneven ground followed by a float down the river..." UNEVEN GROUND??? How about 1/2 mile up an ascent of 300' and 1/2 mile of descent with rocks and roots to climb over. The guide had my left hand, Husband had my right hand and I still fell twice! The remaining mile was on very easy ground. I felt so incredible after such an accomplishment (more on this later).
     
    Juneau - whale watching. We saw plenty too. Humpback whales engaged in cooperative feeding. What an amazing sight. It is sure to make anyone feel very small and insignificant in the grand scheme of things.
     
    Ketchikan - We took the walking tour and boy oh boy did we walk plenty. About 6 hours worth. It really tested my stamina, strength, and balance. Up hills, over bridges, small sidewalks.
     
    One day at sea, not as boring as I left the books behind and we played giant checkers (the pieces were a foot in diameter) and shuffleboard, and ate of course.
     
    The trip really taught me a lot. It showed me that only *I* hold up my progress. I wanted to quit so many times during the hike or walking due to strain and fatigue but I kept going because I knew that I wouldn't see this again anytime soon if ever. That and shame and embarrassment are great motivators. :big_grin:
     
    I am trying some constraint induced therapy today - using crutches with all of my weight on the 'bad' leg. I know it is good for me and I will keep it up for the remainder of today but it is more exhausting than I could have ever imagined. It took me almost 1/2 hour to get from my car to my office & I was sweating.
     
    Since returning from the trip, I have realized that I need to change the way I think about myself and my progress. Despite anyone else's progress or limitations, I have made as much progress as I possibly can for me. I need to keep testing myself and challenging myself.
     
    I have an incredibly difficult time communicating this much less recognizing it for myself; No matter how helpful this website has been for me, & it has been fabulous, I need to limit my time here. I find myself getting 'down' on myself and thinking of myself strictly as a stroke survivor. I am more than that. We are all much more than survivors or caregivers. I have gained so much information and support here, but it is time now for me to back off and visit less. Not that you know me, but I feel as though I know you & I have gotten to enjoy you as such a good friend of mine.
     
    Take care, you. :hug:
  5. justsurviving

    Oh what fun!

    By justsurviving,

    I don't know if it is due to my meds, but I have been having the craziest (and most entertaining) dreams in some time!
     
    A week ago, I dreamt that a good friend of mine (a stewardess) was in the girl's restroom (I rather expected him to be there, too!). On my way to the restroom, I saw my previous advisor/professor. While walking past him, he made a comment that I didn't catch. I turned around and asked him if he needed anything from me. He walked up to me, sniffed me, and then said no. I resumed walking to the restroom and found that my friend occupied the body of a coworker friend of mine (also male but didn't expect him to be in the restroom...). It turns out that he was directing a fashion show in the bathroom and instructing the women how to walk and whatnot. What fun! :Clap-Hands:
     
    Last night, I dreamt that my cousins from California had come to visit us in South Dakota (a regular occurrence in our childhood). We were all adults and having a good time in the basement just BSing and whatnot (also a regular occurrence in childhood) and my cousin Diane had brought a friend of hers - Madonna (the singer). It was a rather jolly good time! :giggle:
     
    I recently finished reading Stephen King's book 'The Stand' - wowzer! I was so immersed in the story. He has a fabulous way of providing rich visual details although I am usually disappointed in his endings. I thoroughly enjoyed this book and just didn't want it to end (odd, considering it was 1153 pages long!). Any recommendations for reading? Hubby & I will be celebrating our six year anniversary (although we have been together for nearly 20 years!) next week with a cruise from Alaska to Vancouver, Canada. I will need some reading material but am so excited as neither of us have ever been on a cruise before. :cocktail:
     
    I look forward to your feedback :big_grin:
  6. justsurviving
    Went for MRI / MRA and....(drum roll, please)...
     
    First good news: they didn't drop me on the floor this time!
     
    Second good news: after pushing the IV needle for the contrast *through* the whole vein and squirting pretty blood everywhere, they backed it out & it worked!
     
    Third good news: Dr. Humorless (neurologist) showed damaged area of brain shrunk and artery is healed.
     
    Hence Fourth good news: I got off Coumadin!! although now I'm on Aggrenox for 6 months.
     
    Leading to Fifth good news: I can eat greens and veg oil now!!
     
    ULTIMATE good news: I can drink alcohol - I can't have more than 3 if I drink every day, so I may have to cut back a little :giggle: but - I GET TO DRINK!!! :cocktail: oh yeah - pass the shiraz my way!
     
    Now that I am less likely to become a bloody (literally) mess if I ride my bike, I may start riding my bike to work (5 miles or so, in flat florida) with hubby's agreement :friends:
     
    Yippee!
     
    Oh, I need to make it clear that I probably can't dance just yet...so it is a mental happy dance.
  7. justsurviving
    I really like made-up words. My dad says things 'in all seriosity' his reasoning is if you can be curious and ask something in curiosity, why can you be serious and say something in seriosity?!
     
    I got my Masters degree at the State University of New York at Binghamton and one of my fellow classmates used to 'dilemmanize' over situations, 'I'm dilemmanizing over...' I liked how it turned into a verb.
     
    Before I came here, I never knew that 'stroke' could be used not only as a noun, but also as a verb, adjective, etc. - awesome!
     
    ------------------------------------------------------------ :cocktail:
     
    Every so often, I think to myself:
     
    Oh My God
     
    I Had A Stroke. I HadA Stroke. IHadAStroke! IHadAStroke! IHadAStroke! IHadAStroke!
     
    And then it just runs all together into a freaky realization that I survived one of the top 3 killers (heart disease, cancer, stroke) and I am amazed.
     
    ------------------------------------------------------------ :beer:
     
    When I first got out of the hospital, I was still out of it in a very weird way - happy, ignorant, bland. Then I started to wake up and notice how much I have been affected & how different my life is, how different I am from my old self and everyone around me. I was bitter and threw plenty of pity parties for myself while my dear hubby didn't know what to say or do.
     
    I'm better. I'm no longer ignorant or bland (and mostly happy though). The bitterness has receded. Slowly. I realized today that I no longer want desperately to trade places with other people, I don't feel AS different as I first did.
     
    I still feel incredibly vulnerable physically and mentally. I used to run and it made me feel more prepared, for what I don't know, but I felt as though if someone were to start chasing me, it would at least take a leetle bit longer for them to catch me (not much, but a leetle). I can't run yet. It makes me feel weak and exposed. My thinking is slower, I wonder if people have scammed me because I may be clueless...
     
    ------------------------------------------------------------- :im stupid:
  8. justsurviving
    I have tachycardia, which, directly translated, means fast beating heart. Usually the episodes last for around 10 minutes and my heart beats over 200 beats/min.
     
    I had an episode recently, while I was on Coumadin and it hurt like all heck so I went to a cardiologist to see if my thin blood could be contributing to this issue.
     
    Cardiologist did not like that I had chest pain and my heart is beating faster than 180 bpm. He thinks that it is a fatal type of tachycardia and needs further tests to diagnose this.
     
    As I was speaking to him, I mentioned that a previous cardiologist (prior to stroke) said that one way to stop the tachycardia is to 'bear down' to put pressure on the vagus nerve to stop it. I told him that at the end of Sept 2005, I had a tachycardia problem and really 'bore down' hard to try to stop it - my heart was beating at 240 bpm (I had an exercise heart monitor on). He said that most likely, the effort of exessive bearing down caused the dissection in the carotid artery and caused the stroke.
     
    Great - I caused my own stroke...
     
    So now, I have to go in for a stress test tomorrow (2 1/2 hours..ugh!), and an EP study in which they insert a catheter through a vein in my groin and map out the electrical circuit of my heart to make an accurate diagnosis and then have heart surgery to correct it.
     
    Frankly, this is freaking me out a little & ticked me off too - I had been informed of the surgery 2 years ago and if I had done it then, I probably would not have had the stroke. :Tantrum:
  9. justsurviving
    Hubby and I decided to just hang out together last night and he suggested a bike ride - each with our own bikes!!
     
    I said we could ride to the park which is about 4 miles round trip and he seemed up for it. As we started out, he saw someone he wanted to talk to so he said he would catch up with me. I was riding happily along and knew that I had to pedal up and over an overpass - I DID IT! I was grinning so wide that I had to stop and pick bugs out of my teeth. :big_grin:
     
    Once I got to the park, I started wondering what was taking him so darn long and I decided to just turn around and go back. As I was clearing the overpass again, I saw him driving by looking for me. By the look on his face, all I could think was "uh oh, dad's mad." When I got home, I was on :cloud9: with my accomplishment. As soon as I walked in the door, I got about three earfuls of yelling about responsibility, worry, etc. etc. At first, I felt like a petulant child, but then I took a good, long look at his red face and saw the worry and fear that he experienced.
     
    I apologized many, many times. Once he accepted the apology, I said, you're impressed too, aren't you?!! He congratulated me and warned me not to do it again.
     
    He sure does love me. Who else would put up with me?
  10. justsurviving
    Yesterday, May 13, 2006 was my six month "anniversary(?)" of my stroke. I decided to make a timeline of this experience.
     
    Start of November - migraines with blindness
    11/11 - TIA at work, visit doctor had "normal" CT scan
    11/13 - TIA at 10k starting line, stroke during nap
    11/13 - 11/16 - ICU
    11/16 - 11/18 - regular hospital
    11/18 - 12/1 - rehab hospital (released from hospital on Dec 1st)
    11/18 - moved finger - arm came along slowly over the next week
    11/20 - dressed myself
    12/12 - started to drive automatic transmission (shouldn't have driven so early, attention span too short)
    12/24 - no more quad cane, wanted to walk for Christmas
    walking *slowly* improved (still improving)
    12/25 - rode tandem bike with hubby
    2/15 - rode own bike for a *very* short ride (leg kept falling off pedal)
    3/13 - stopped physical therapy - no more visits left
    4/1 - started to drive manual transmission (my own car, finally!)
    4/25 - SKIPPED!
    5/6 - attempted to jog (very ugly and uncoordinated)
    5/10 - attempted step aerobics video (still ugly and uncoordinated)
     
    I know that when I look at this list, it seems that I have progressed so far and so fast, I wish it felt that way to me - doctor says that age and health played a large part.
     
    What will my 1 year look like?
     
    What I feel now:
     
    Frustrated at my lack of coordination
    Scared that part of my brain is dead. gone forever. never to return.
    Terrified at what life will bring at me next. What other health issue will we address? Will I ever graduate with my degree? What will I do with my life? What kind of meaning will my life have to me? to others?
     
    To review November 13, 2006
     
    - Stroke woman
  11. justsurviving

    Frustration

    By justsurviving,

    "Pity party for one?"
     
    I am having a heck of a time remaining positive anymore...
     
    I get ladened with thoughts and feelings of bitterness that I have to recover as best I can from something I spent most of my life trying to prevent (watched weight, BP, ate healthy, exercised, didn't smoke, etc).
     
    Dang it all - I practically preached a healthy way of life. I come from a long line of regreters & I admit that I regret that I didn't take full advantage of my health the way I should have AND of course I regret not going to the doctors sooner and demanding an MRI when I first went to the doctor with the TIA (transient ischemic attack).
     
    Bloody H-E-double hockey sticks!
     
    pity party over and out.
  12. justsurviving

    Meditation

    By justsurviving,

    I have a difficult time going to sleep at night (and a harder time waking up in the morning). So, I have decided to try meditation as a way to calm my mind.
     
    I relax, listen to my breath and picture all of the craziness in my mind being gathered up with the incoming breath and directed out with the outgoing breath. To accomplish this, I needed to picture my mind. My picture resulted in a very quaint and bright attic. It has lovely hardwood floors and hardwood paneling on the wall with windows (like dormers). I see everything swirling around as I breathe in and rush out as I exhale leaving me with a beautifully clean room. As I looked around, I noticed a black rock in the middle of the floor. It was coal. I started to chisel at it and it continued to get bigger (picture an iceberg wherein only the tip is above water but the majority of it is below). I chisel until I fall asleep and the next night - I see what I chiseled and now it is big enough to sit on.
     
    I tried to relay this to a friend who is a meditation guru and she said to leave it alone that it may turn into something valuable.
     
    Like a kid with a scab, I continued to chisel it away. It got huge - the flooring just gives way without a mess (although if there was a mess, I would just breathe it away!). Then there came something that I couldn't chisel away - it was small, hard, and whitish. I believe that I am beginning to uncover a diamond!
     
    My psychological interpretation, now that I think about it, is that the coal is my 'self' after the stroke. It is big, black and ugly. Not the real me and I can't figure out how to get back to me so I just try to chisel the stroke stuff away. The diamond, I believe, represents the new, post-stroke me. I need to realize that I will never be the way I was before, ever (wow, that is really harsh) and I haven't accepted that yet. I do think that I am beginning to accept it and uncover how the new me doesn't necessarily mean a "less me" it just means different.
     
    Dude, that is way deep.
  13. justsurviving

    Neurologists...

    By justsurviving,

    My 5 month checkup with the neurologist went swimmingly. The poor guy has no sense of humor, I swear. He asked what happened to my knees. I told him that my husband pushed me (very obvious that I was joking) and he just looked at us. Hubby said that I had to tell the truth (buzzkill) so I did.
     
    Dr. Humorless asked if there was any recent progress and we told him that I can now skip :Clap-Hands:
     
    He looked shocked and shook his head, I nodded my head smiling widely. He proceeded to explain the dangers of skipping how I could fall and break something putting him in a tough position to deal with it. All I could think was "skipping? you know - hop with right leg, hop with left leg while moving forward? skipping is what children do. OH MY GOD, THE CHILDREN - they are all in serious danger!!!"
     
    Gimme a break already
     
    We are happy about the skipping and the step that it represents toward running, freedom and happiness. Phoey on Dr. Humorless.
  14. justsurviving

    Good news!

    By justsurviving,

    I have been trying to get back into running so each night, my husband and I alternate regular walking with brisk walks and walking backwards. The night before last, I gripped hubby's hand and said "let's try to skip" he asked if I was sure since I haven't been successful with it in the past and I said "c'mon, let's try it!" So, holding tightly to his hand for balance and support...
     
     
    WE SKIPPED!!!
     
    I couldn't do it for long since my left leg wasn't cooperating fully, but I did it!
     
    We tried again last night and I guess it took - I skipped again, for longer!
     
    I am so excited about this. One of my PT people asked "Is skipping that big of a deal?" when I complained that I couldn't.
     
    It is that big of a deal.
     
    Skipping to me represents being carefree and utterly happy. I have wanted to be that again so badly. I know that I'm not completely there yet, but boy oh boy does it feel good to be able to skip again.
     
    I may even skip to the 'loo' here at work :big_grin:
  15. justsurviving

    My stroke

    By justsurviving,

    I am a 34 year old happily married woman who is a non-smoker, long distance runner with low blood pressure who had a stroke November 13, 2005.
     
    I had been experiencing severe headaches that I just assumed were migraines for about 2 weeks. Then on a Friday afternoon (November 11th), I had trouble walking with my left leg, just for a couple of steps along with a wicked headache. I decided to call the doctor and made an appointment for 3:15 that afternoon. I just thought I was stressed out and my body decided to freak a little. The doctor wished there was a place to get an MRI that late in the day but couldn't so I got a CT scan instead - they reported it as normal so I went home.
     
    At 7 am on Sunday, Nov 13th, I was at the starting line with my husband at our first 10k race. My husband was a little irritated with me because I was "acting weird" and wouldn't warm up with him and I couldn't give him an answer as to why. Then I collapsed - my left side just completely gave out on me about 5 minutes before the race was to start. After a minute or two, I got up and limped a little but was otherwise fine.
     
    We walked back to the car & hubby was upset that we didn't run. While we were driving back home (45 min drive), I told him that I didn't feel well and needed to puke. He handed me a plastic grocery bag! He thought I was screwing around and faking it. I puked and he thought I was just making noise. Well, the bag had a hole in the bottom...When we got home, he grabbed the bag and spilled yellow bile/puke all over the inside of the car. He told me to go in and lay down and that he was going to clean the car.
     
    I laid down & when he got back he napped with me. He woke up and went into the living room a little later. When I woke up, I tried to get out of bed to go to the bathroom but I couldn't move my left side at all. I called for him and told him that I had to go to the bathroom. He said "So then go!" I said "I can't" So he came in and carried me to the bathroom where I had to have a bath at that point.
     
    We were so dumb not to call 911 right away but he wanted to save me the embarassment of having people in our house with me partially naked (thank you!). He gave me a bath and dressed me and finally called 911. The paramedics were fast and very nice and helpful. They were hesitant to diagnose it as a stroke since I am fairly young, a non-smoker, and a long distance runner so they took me to the hospital.
     
    I went to get an MRI & an MRA and the technician asked me to slide onto the machine (on my left side!) and try as I could, it was impossible without using the gurney as leverage. Well, the gurney has wheels, you see. So it went flying & I fell to the floor! No further damage, as far as I could tell - not too far a drop...
     
    I was in ICU for 3 days, the regular hospital for 3 days and in the rehab hospital for 2 weeks with a stroke secondary to a carotid artery dissection. The carotid artery on the right tore and collapsed preventing blood flow to my brain resulting in a stroke in the right hemisphere in the basal ganglia. I was a hemiplegic with full paralysis on my left side for nearly 2 weeks. I now have full movement (from a HECK of a lot of physical therapy) but still have problems walking and some difficulty typing and of course I can't run just yet.
     
    About 3 weeks before the stroke, I defended my dissertation proposal to my committee. It was approved with a few revisions and I am currently in the midst of collecting data - I am nervous about finishing it up because I feel as though I think slower now. I have asked if I lost IQ but no one has noticed (I have them sooo fooled). I am hoping to graduate with my Ph.D. in August.
  16. justsurviving
    I have never been particularly graceful but I usually saved myself from extreme embarrassment (usually!)
     
    Boy how that has changed since the stroke. I have fallen enough times to not count any longer. Today, as I was walking and stepping up on a curb, my left leg didn't lift high enough & my toes caught the curb. I tried wildly to hurry it up to catch myself, but *nooooo*! In an uppity scale neighborhood, I went flailing onto the rather new (read: very rough) sidewalk scraping both knees along with my hands. Swan Lake, it was not. I am still red-faced. Since I am on Coumadin (an anti-coagulant), the bleeding was profuse. A very nice and concerned shop owner stepped out and offered her first aid kit (halleluya!). After blotting and cleaning, a large bandage with neosporin was applied. An hour later, blood and pus filled the bandage so full, it was oozing out of the bottom.
     
    Great.
     
    Of course.
     
    Lordy, lordy, could I please get a break?!! A new bandage and plenty of rubberneckers later, all is contained.
     
    Will I ever be normal? Do I want to be?
  17. justsurviving
    I am so incredibly lucky to have a spouse that is a nuturing caregiver yet pushes me when I need it.
     
    First, if not for him, I sincerely doubt I would have ever called 911. I was just so out of it and apathetic about my hemiplegia. One of the more humorous things (looking back it is funny) was when my husband was bent over me and yelling "how can you not be freaking out that you can't move your left side?!!" and all I could think of was "I don't know" I guess it just didn't seem to be a big deal, I was so disconnected with my body.
     
    Second, he spent every single moment in the hospital with me possible. When allowed to stay overnight, he was there for 2 weeks straight, 22 hours a day (I encouraged him to shower and change clothing!).
     
    Third, he is such a caring person that didn't balk at any task that was asked of him. In some ways, I am glad that I stroked instead of him - I don't think I could measure up to his caregiving abilities and patience (definitely not the patience part!).
     
    As if you didn't figure it out by now - this blog is dedicated to my wonderful husband of 5 1/2 years (although we have been together for 17 years total - high school sweethearts).
     
    He is my biggest & loudest cheerleader :cheer: and I hope he knows how much I appreciate all that he is and has done. :hug:
     
    Thank you, buttnugget!
     
    Love, your wife.
  18. justsurviving
    I recently received an email from a relative to whom I haven't spoken in quite awhile and she asked how I have turned the stroke experience into a positive. I am extremely flattered that she thought I could. I found the question stimulating and turned it over in my cranium for awhile.
     
    Disadvantages :yucky: :
     
    - A stroke is stinkin expensive (hospital, rehab, meds, etc.)!
    - Being paralyzed is worse than it looks.
    - The blow to self-esteem is severe and the fight to get it back is brutal.
     
     
    Benefits (for lack of a better term) :hahaha: :
     
    - Didn't know it was possible, but it brought Bob & I closer together.
    - It turned me toward acupuncture and I love it.
    - It gave me a new appreciation for automatic transmission vehicles, although I still like my current ability to drive my manual 5-speed.
    - For all of my life, I have never wanted to have children (husband & I concurred), the stroke had made me reconsider this decision. Trying to convince husband toward the possibility had been rough going!
     
    Miscellaneous column :
     
    - For better or worse, I am a more laid back driver; calmer.
    - I give people more 'slack' than I used to. Is that good or bad? I guess it depends on what side you are on!
  19. justsurviving
    I had a nightmare last night like none I have had in a long time.
     
    I was standing before my dissertation committee in my final defense for my Ph.D. and while my committee members were discussing a few topics amongst themselves, I had another stroke. This one was severe. My face was paralyzed and my whole left side went out. As I was laying on the floor of the conference room, I kept trying to say "call 911" but it came out distorted thanks to the paralysis and no one heard me or noticed that I had fallen. I felt so extremely scared, vulnerable (reoccurring feeling for me since my stroke), and upset at my committee ignoring me.
     
    I told my major advisor about my dream and, thankfully, we laughed about it. There are no words to describe how lucky and happy I feel with having him as my advisor. He is understanding, intelligent, compassionate (sometimes to a fault...), and everything that my two other advisors weren't. :big_grin:
     
    My hubby and I rode our bikes to my work on Sunday to assess my ability to handle it. (This is where Reality rears its ugly head) It was about 5-6 miles each way and, amazingly, with a headwind the whole time (now I feel like my grandpa who walked to school uphill both ways!). I fell once and was sweaty and pooped out. I need some practice before this is something I can do on my own. I was a little frustrated with my inability to accomplish this. It is something I used to be able to do on a daily basis...BAH on me!
     
    Like many other stroke survivors, the only 'normal' person that I can compare myself to is my 'prestroke' self and I consistently fail in the comparison. I don't have the energy, zip, drive, grace (although my husband will say I didn't have grace before!) or feeling of what I used to be. I totally and completely realize that I am creating a new me, I just don't really like the new me so much right now. I will give it more time (7 months today).
  20. justsurviving
    I have been semi-successfully teaching my affected side some new tricks lately.
     
    For instance, my left hand can now brush my teeth (yeah, yeah, it's an electric toothbrush!) and it can blow dry my hair (though I never fully blow dry my hair, just get the wet out).
     
    I am trying to teach my left foot to walk more on the instep to strengthen the ankle muscle but I have not been successful at this whatsoever.
     
    I am trying to train my brain to focus and pay attention more, wait, what was I typing? Oh right - yeah, that is going just so-so. :big_grin:
     
     
  21. justsurviving
    I mentioned previously that I have a new super power, *STROKEDAR*, which allows me to detect strokers in a single sweep of the eye .
     
    Apparently it came at the expense of a previous ability. I have always had a fascination with science and biology. I loved to 'perform surgery' on poor Bob when he had so much as a splinter in his paw. Post-stroke me is a complete wuss now when it comes to the sight of blood and whatnot. In the shower this morning, Bob removed the bandaids from the catheter entry points and I saw that they were bloody. I actually then fainted in the shower. I woke up on the shower stall floor to Bob gently covering me with a towel so that I wouldn't get cold.
     
    Ugh. That is dumb. And ridiculous. It was a tiny spot of blood, not like I had a gusher for goodness sakes! I also look like I have been punched really hard on both sides of my hip where the catheter entry points are located. Black, blue, and an aquamarine-green. Actually fairly pretty if it wasn't so sore and on my body rather than a canvas.
     
    Bah!
  22. justsurviving
    A couple of friends, Joel & Dan, visited this last weekend - both stewardesses (at least that is how I tease them - both males) flew in on Thursday evening. I took time off on Friday to visit with them. I dragged them to work with me to show them my office and introduce both to my advisor/boss. Then I ran a few errands while they sufferred with me. I don't think they had much fun Friday but I was thankful for the company. We met up with Bob for a great sushi dinner and watched a funny movie (Drop Dead Gorgeous) and copied the midwestern accent for the remainder of the weekend (oh crayap!). On Saturday, we tooled around for a bit and went to a bourbon-inspired party. I am not a bourbon drinker but had a jigger or so out of politeness. Then I had some other drink that we brought along (Mike's hard apple or some such thing).
     
    It felt as though we had stayed for hours so I hinted that it was time to go - it was only 9 pm or so! We went home and played Cranium (a board game) with Dan & I as one team and Bob & Joel as the opposing team. I get a bit too competitive for my own good and got frustrated when we were losing but Dan was a champ - he made the game such fun, in my opinion. He tried his hardest and had to put up with me. While trying to draw King Kong, I kept guessing something along the lines of the Three Little Pigs...poor Dan! :blush:
     
    Joel & I have known each other for ages (~20 years or so) and we reminisced at the expense of both Dan & Bob. Old jokes and stories were told time and again with at least Joel and I laughing loudly. We went to breakfast on Sunday with some local friends as a graduation celebration. Delicious food and interesting conversation - it was almost painful to leave I was having such a good time.
     
    We decided that a bike ride was in order - we have a tandem bike and Bob & I have our own bikes. Joel & Dan took the tandem and I led while Bob took up the rear. For some reason, I had difficulty mounting my bike. I hope it was just nerves of trying to get on with an audience but Bob had to help me. Sometimes my affected leg doesn't stay on the pedal all that well, but it is doing loads better lately. We had a good time joking around and getting some exercise in at the same time. Poor Dan was the front person on the tandem and Joel tried to upset the bike a few times by throwing his weight around a bit. It is such a good thing that Dan has a good sense of humor.
     
    We went to dinner and dropped them both off at the airport. It was good to have guests that didn't depend on or expect us to entertain and give them a tour of Florida. Great weekend. :beer:
  23. justsurviving

    16 months

    By justsurviving,

    Not yet a year and a half since I fell over. I am trying to be patient which is not my strong suit. Over the weekend, we bought a trampoline. After 4 hours of unpacking and setting it up, we bounced and bounced and bounced! :bouncing_off_wall:
     
    Bob has a friend that broke his back many years ago and had partial paralysis in his lower legs. Throughout rehabilitation, he said that the thing that seemed to help the most was using a trampoline. So, we bought a trampoline - a big one. It is in our backyard and has a large safety net surrounding it so that I won't bounce right out of our yard. :blush:
     
    The fact that it provides balance opportunities since it is instable is great according to my physical therapist. Our plan is to bounce for 15-20 minutes a night. The hardest part for me is getting in and out of the netting, it is a little awkward and probably amusing to watch, but I managed it all on my own last night. It is a surprising workout as well - we get our heart rates up a good bit while bouncing. :silly:
     
    I promised Bob that I will re-evaluate everything at the 2 year mark. I will try my best to be patient and work at recovery (not that I will give up at that point, but this is my current goal).
  24. justsurviving
    First - Bob is home. He got back from Nigeria in mid-Dec, about 2 weeks earlier than anticipated. It is so good to have him back!
     
    Okay - to the meat and point of this post.
     
    I have had to return to PT recently due to shoulder pain (on the affected side) and knee pain (unaffected side).
     
    Both are directly and indirectly (respectively) related to the stroke. Subluxation (slight out of socket) of my affected shoulder is due to weak muscles and has just recently decided to rear its ugly head. The knee pain on the unaffected side is due to overcompensation of the affected side. No one ever talks about this possibility. I should have known and have tried to strengthen the affected leg but it was all just too much for the unaffected leg to take on.
     
    I had wanted to ask the Physical Therapist why my affected leg doesn't have muscle memory. Well, duh. I'm glad that I thought it through rather than actually have the chance to ask the therapist.
     
    "Muscle memory" is a misnomer - it really doesn't have much to do with the muscle itself. The brain cells that used to control it are dead and eaten by now. The brand new brain cells that now control the affected side never used to do this - how can they have a 'memory' of something they never used to do? Of course they can't. Stroke PT exercises have to be kept up for a lot longer than with usual injury-related PT exercises.
     
    Frankly, this needs to be explicitly explained.
     
    The other thing I noticed is that I can't work on physical and mental stuff all at the same time. It is simply too much and overwhelming. Again - duh. The brain is but one organ. You can't fix everything all at once. I also realized that because it is the brain - this creates a unique challenge. When you have a pain in your foot, how do you know that there is pain? The brain tells you! I am going out on a limb here to say that it is practically impossible for the brain to recognize its own 'pain' and to fix itself. I can acknowledge and recognize that I have a physical or mental issue from the stroke, but I can't immediately fix it. It takes time, sometimes more time than we want, to fix the brain. It is doable, no mistake about that. It just takes time.
     
    That brings me to my Netflix movie review - The Brain Fitness Program.
     
    It was a documentary from PBS and totally worth the viewing. It supported and added to my knowledge of how malleable and flexible the brain is and how we must keep ourselves challenged and healthy throughout our lives. One example is how I helped to recover my affected arm. I switched my office around so that my affected (and nondominant) hand controlled the mouse. While frustrating at first - it really helped it recover by leaps and bounds. It forced an area of the brain that had a different job to get a new gig and to grow substantially (as supported by the neuroscientists on this documentary).
     
    I really can't say enough good things about this movie - really cool bonus stuff too - Alzheimers info, pieces and parts info, how to keep your brain healthy info, etc.
     
    Grab some walnuts (good brain food!) and enjoy the movie!
  25. justsurviving

    Durr

    By justsurviving,

    Totally didn't notice that the link was incorrect.
     
    www.istroked.wordpress.com
     
    I have blogged here for ages, I know the difference between Draft and Publish. It was frustrating and long and frankly not worth the aggravation. Plus (big bonus) I can say the big S and H words (instead of dookie or whatever).
     
    ha!